Without a Crystal Ball

Our Journey through Chronic Illness

Hey there!

How have you been? Wow, man time flies! We have known each other for 4 years, and I just want to say something. We are over you. See, I have been fighting with you for a while. Each and every day, I have tried ways to make you not be there. We have tried chewy sticks, smelling food, eliminating food, adding food, reducing textures, pureeing, mashing, and even liquifying the food. It’s come to my attention that it isn’t working anymore. It’s not me, it’s you. See you make it very difficult for my son to swallow and chew. His therapists say it’s a sensory disorder, but I know it is fear. He has choked and vomited so many times from trying to eat, and he knows it’s hard to eat. He isn’t overwhelmed by you, he’s afraid of you. I guess I can’t really blame him. If my tongue didn’t move laterally, having food in my mouth with no means to get it down my throat would be terrifying. Lately, he even cries in panic when food is in his mouth and he shouts with tears “GET IT OUT”. The look on his face is always pure terror.

I have been doing this all wrong for the last 4 years. If my child were blind, I would not force him to see. I wouldn’t make him try to visualize and see the ground. I would find ways to help him navigate the world without his vision. We would take steps to empower him, and help him gain independence. We took steps last year to help him gain independence. He had surgery to get a feeding tube placed, but we still hoped he would want to eat by mouth. I had strong hope that he would feel less stressed about food. In many ways it did improve his feelings about food. He simply didn’t want to eat much of anything. Once he got proper nutrition, he started bouncing off the walls in excitement. His speech exploded, his eagerness to learn was expanding, and he gained the ability to jump, hop and dance. Having a tube gave him freedom. For the first time in his life he had energy to do what he wanted to do, and food was the last thing on his mind. We lost several years in development sitting at a table hoping everything we tried would make him swallow. Now it’s time to leave the table.

A few nights ago I was tucking him to sleep he said something to me that changed everything. It was four really simple words. He was looking at his feeding pump and the G-tube extension, and he looked up to me and said it. “Mommy, I feel better.” I looked at him sort of stumped. I wasn’t really sure what he meant. He is at an age where a lot of really cute things come out of his mouth. I wanted to clarify with him, and I leaned in to him to ask him what he meant. “I feel better when I have food,” he reiterated to me. I again wanted to clarify what he meant by food, and I asked him if he meant food that he eats by his mouth or food that goes in his tummy. He picked up the extension in his hands, and he said, “The food that you connect to my tummy. It makes me feel better.” That was then followed up by “Eating is really hard.”

In that very moment, it hit me like a ton of bricks. He’s been trying to tell me this for years. With his tears, screaming, choking, coughing, and by shaking his head violently at me, he has been trying to tell me it’s too hard for him to eat. For all this time, I have ignored it and just fought through it hoping it would just one day click for him. It’s not going to just click. Why haven’t I seen it? He can do many, many things, but he cannot eat. And guess what? It’s ok! He doesn’t need to eat. He has this amazing tube that provides him all the nourishment he needs. Now he is free to explore the world unencumbered by his feeding disorder. He can watch us eat and inquire about our food, but he has the right and the ability to tell us he doesn’t want to eat it or even try the food. He finally has a choice. His choice was loud and clear, and he doesn’t want to fight with you anymore.

Today we will stop fighting with you. We will abandon the Sensory Therapy we have been doing to help him because we know it’s not sensory related. As his mother, I will enable him to have the choice to not eat and use his tube for nutrition. I have learned something so valuable in this journey with you, Feeding Disorder, and that is that Fed is the best way to be. His fed doesn’t look like mine, and it doesn’t look like the majority of the world. For him, this fed is the best way to get him the nutrition, it enables his brain to learn, and he has energy to finally play. When he is ready to tackle you on his terms, I will gladly guide the way and help him learn to eat. However, he has told me he isn’t ready, and he likes the way he feels when he can just use his tube. In a way, you won the battle, but we will win the war because we found a way to bypass your obstacles. He is getting everything he needs, and he doesn’t need you in his life anymore! We will embrace his tube, and if he wants to use it for life, that is his choice.

Sincerely,

The very proud mom of a Tubie

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One thought on “A letter to my son’s Feeding Disorder

  1. RealMaryZ says:

    Wow! Congratulations! Great post.

    Like

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